Again, no news - good news. Zevi is feeling well, eating, and might have even put on a little weight. So far so good.
A little extra on the "shkoda-ness". Earlier today Alla overheard Benya tell Zevi:
"Help needed, brother! Help needed!"
"What do you need your brother's help for, Benechka?" Alla inquired
"To pour out the water" replied Benya.
It goes without saying that whatever he intended to pour the water out of indeed needed water to stay in.
Sunday, June 29, 2014
Thursday, June 26, 2014
Another day, another check-up
Not to repeat the facebook page Super Zevi, but I am tired, so:
Today Zevi had a check up that included a CBC (blood work) as well as an EKG, and echo, and a chest X-ray. All came out fine, though the blood draw was a pain (literally) - both veins got "blown" - burst during the blood collection. On the third poke the blood was collected.
Platelet count came in very low, so Zevi had his first platelet transfusion today. The docs decided to stop 6MP for now. The heart and lungs were declared in good shape.
Transplant news: donor 1 informed the transplant coordinator they will not be available in late July, so - for the moment - the schedule has slipped two weeks. This should have no effect in the end. In the mean time, donor 2 was confirmed as a full match and is being checked for availability. We might switch.
So - one day at a time. Doing well so far, thank G-D
tOn the language front...Zevi and Benya continue to make more sense, or at least repeat more interesting things. Benya, recently not happy with mom, shared with me: "Mom does not deserve candy. She did not behave. We will put her in the corner. For an entire day." After a brief negotiation mom's sentence was commuted.
Today Zevi had a check up that included a CBC (blood work) as well as an EKG, and echo, and a chest X-ray. All came out fine, though the blood draw was a pain (literally) - both veins got "blown" - burst during the blood collection. On the third poke the blood was collected.
Platelet count came in very low, so Zevi had his first platelet transfusion today. The docs decided to stop 6MP for now. The heart and lungs were declared in good shape.
Transplant news: donor 1 informed the transplant coordinator they will not be available in late July, so - for the moment - the schedule has slipped two weeks. This should have no effect in the end. In the mean time, donor 2 was confirmed as a full match and is being checked for availability. We might switch.
So - one day at a time. Doing well so far, thank G-D
tOn the language front...Zevi and Benya continue to make more sense, or at least repeat more interesting things. Benya, recently not happy with mom, shared with me: "Mom does not deserve candy. She did not behave. We will put her in the corner. For an entire day." After a brief negotiation mom's sentence was commuted.
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| Zevi napping while getting an EKG, 6/26/14 |
Sunday, June 22, 2014
A good Sunday
A Sunday that went well, thank G-D. Boys are in bed. Yes, Alla is in the room. And yet - it was a good day. A trip to the zoo, an evening in the city that included two rides on trains and Zevi actually eating a meal, even though he found his appetite somewhere after 8:15PM - a time when we should have been home.
Some more examples of the recent language skills. While watching someone at the park blow many bubbles, Zeva said "какой замечательный фейерверк!" - "what wonderful fireworks!" Not sure where he got that. Today Zevi said, after being told something by Grandpa Misha, "Yes, how could I forget!" That one, I am pretty sure, he got from me.
Benya, who is somewhat sneakier has upgraded from toy-trades to trying to incite his brother to trouble-making. Recently after being told by Alla to quit spilling water, Benya was heard saying "Brother, let's go, I know where water is!" Trouble-making, in general, appears to be a favorite pass-time for both. Some time ago the boys learned the word "шкода" - "shkoda" - which has nothing to do with the Czech car. The word means both the "trouble" and "trouble-maker". On many occasions one of the boys (though Benya more frequently, I think), would be seen suddenly appearing with a huge grin. When asked what he is smiling about, he would answer "Я сделал шкоду!" - "I made trouble!" At other times one of the would be kind enough to announce that a "shkoda" is coming - "I am going upstairs to make shkoda"
At the moment both shkodas are in bed, but Alla is in their room for the second time, at Zev's request. Спи, шкода!
Some more examples of the recent language skills. While watching someone at the park blow many bubbles, Zeva said "какой замечательный фейерверк!" - "what wonderful fireworks!" Not sure where he got that. Today Zevi said, after being told something by Grandpa Misha, "Yes, how could I forget!" That one, I am pretty sure, he got from me.
Benya, who is somewhat sneakier has upgraded from toy-trades to trying to incite his brother to trouble-making. Recently after being told by Alla to quit spilling water, Benya was heard saying "Brother, let's go, I know where water is!" Trouble-making, in general, appears to be a favorite pass-time for both. Some time ago the boys learned the word "шкода" - "shkoda" - which has nothing to do with the Czech car. The word means both the "trouble" and "trouble-maker". On many occasions one of the boys (though Benya more frequently, I think), would be seen suddenly appearing with a huge grin. When asked what he is smiling about, he would answer "Я сделал шкоду!" - "I made trouble!" At other times one of the would be kind enough to announce that a "shkoda" is coming - "I am going upstairs to make shkoda"
At the moment both shkodas are in bed, but Alla is in their room for the second time, at Zev's request. Спи, шкода!
Saturday, June 21, 2014
Better language, worse sleeping habits
The medical update first:
No news, really, which is good news. Zevi continues to take 6MP supported by anti-nausea medicine; as of today an antibiotic has been added as a preventive measure - since the immune system is now somewhat suppressed, the meds are helping to keep various bugs at bay.
The Boston grandparents have been in town for a week. Grandma Lina flies back tomorrow, while Grandpa Misha will stick around for another week to hang with us.
The only really major change to the lifestyle so far has been the night time ritual. The one aspect of our life that was well-organized has taken a substantial setback. As a result of a particularly rough week, Zevi now expects someone to sit in the room after the lights are out. Further, some time between midnight and 3 he wakes and is quickly transferred to our bed, where he sleeps with Alla until 7 or so. I migrate to the office and sleep there until Benjamin wakes up, which can be 7, and can be 5:40 - depends on a day. We understand fully that we have ruined the routine. We also understand the routine can be re-established at the cost of a couple of days of conflict. So far we do not have the stomach for that. So it goes.
Just because I have not been mentioning language skills lately does not mean there has not been huge progress. Benjamin talks incessantly. Continuous live broadcast from Planet Benya. Zevi speaks less, somewhat less clearly, but makes his point understood just the same. The various pearls of the boys will be described here periodically. Today Benya got a haircut and, in a moment of vanity, asked "Am I handsome?" Zeva done something similar a few days ago, after being dressed nicely and watching his reflection in the mirror: "I am so handsome!"
Clearly, they got the language from mom who was dressing them for some event or other. Most of the speeches revolve around fast cars and powerful trucks. In Zevi's case, a very impressive array of verbal jiu-jitsu is displayed when avoiding eating. Same verbal display, by the way, continues to be matched by Grandma Rita's unending patience.
Benya has started to pick up a little English. On one occasion he pointed to a toy and said "this one!" in English. So far - an isolated incident.
On this note - the joint force of grandparents has given Alla and I the night off. I am going to take advantage and run.
No news, really, which is good news. Zevi continues to take 6MP supported by anti-nausea medicine; as of today an antibiotic has been added as a preventive measure - since the immune system is now somewhat suppressed, the meds are helping to keep various bugs at bay.
The Boston grandparents have been in town for a week. Grandma Lina flies back tomorrow, while Grandpa Misha will stick around for another week to hang with us.
The only really major change to the lifestyle so far has been the night time ritual. The one aspect of our life that was well-organized has taken a substantial setback. As a result of a particularly rough week, Zevi now expects someone to sit in the room after the lights are out. Further, some time between midnight and 3 he wakes and is quickly transferred to our bed, where he sleeps with Alla until 7 or so. I migrate to the office and sleep there until Benjamin wakes up, which can be 7, and can be 5:40 - depends on a day. We understand fully that we have ruined the routine. We also understand the routine can be re-established at the cost of a couple of days of conflict. So far we do not have the stomach for that. So it goes.
Just because I have not been mentioning language skills lately does not mean there has not been huge progress. Benjamin talks incessantly. Continuous live broadcast from Planet Benya. Zevi speaks less, somewhat less clearly, but makes his point understood just the same. The various pearls of the boys will be described here periodically. Today Benya got a haircut and, in a moment of vanity, asked "Am I handsome?" Zeva done something similar a few days ago, after being dressed nicely and watching his reflection in the mirror: "I am so handsome!"
Clearly, they got the language from mom who was dressing them for some event or other. Most of the speeches revolve around fast cars and powerful trucks. In Zevi's case, a very impressive array of verbal jiu-jitsu is displayed when avoiding eating. Same verbal display, by the way, continues to be matched by Grandma Rita's unending patience.
Benya has started to pick up a little English. On one occasion he pointed to a toy and said "this one!" in English. So far - an isolated incident.
On this note - the joint force of grandparents has given Alla and I the night off. I am going to take advantage and run.
Monday, June 16, 2014
Been about ten days since my last post. At this point Zev is feeling a little better. He still eats badly; the only person who can get him to eat consistently is his grandma Rita. In that she reminds me of a glaciers: slow, infinitely patient, unstoppable.
The plan, as of this point, is to proceed with donor 1. The donor has been informed by OHSU that we would like to go ahead with them. Planned check-in date at OHSU is in late July.
In the mean time the boys have been to the McMinville Air and Space museum (some pictures later) and liked it a lot. We did not visit the "space" end of the museum, but wondering among the airplanes was worth the drive. They also go to stand on top a MiG 15 and a T-34. That's old school soviet jet fighter and WWII era tank, respectively. Grandpa Tolya had a blast with them.
Two days ago the Boston grandparents flew in for a visit and today we went to see the dinosaurs at OMSI. The exhibit is impressive even for adults. Most dinosaurs are to scale, the move and roar. Boys had a blast. As usual, Zeva was a little more adventurous while Benya worried about all of us being eaten. In the end, we left dinosaurs behind and headed to the usual areas of the museum.
The plan, as of this point, is to proceed with donor 1. The donor has been informed by OHSU that we would like to go ahead with them. Planned check-in date at OHSU is in late July.
In the mean time the boys have been to the McMinville Air and Space museum (some pictures later) and liked it a lot. We did not visit the "space" end of the museum, but wondering among the airplanes was worth the drive. They also go to stand on top a MiG 15 and a T-34. That's old school soviet jet fighter and WWII era tank, respectively. Grandpa Tolya had a blast with them.
Two days ago the Boston grandparents flew in for a visit and today we went to see the dinosaurs at OMSI. The exhibit is impressive even for adults. Most dinosaurs are to scale, the move and roar. Boys had a blast. As usual, Zeva was a little more adventurous while Benya worried about all of us being eaten. In the end, we left dinosaurs behind and headed to the usual areas of the museum.
Friday, June 6, 2014
3rd birthday, good news
The boys' third birthday was today. After work we briefly met with the family at Cook's park. A couple of small cakes, some play on the play structure, pizza, a toast to health. It was a good evening.
It was made notably better by news from OHSU: the results from donor 1 are in, and the "10 out of 10" match is confirmed and the person was cleared by the blood work as well. At this point, we will wait for the second donor's results - gotta have back up. In the mean time, we can start planning the next stage of this saga.
It was made notably better by news from OHSU: the results from donor 1 are in, and the "10 out of 10" match is confirmed and the person was cleared by the blood work as well. At this point, we will wait for the second donor's results - gotta have back up. In the mean time, we can start planning the next stage of this saga.
Thursday, June 5, 2014
A poke-free visit with the docs, another donor makes contact.
Today was a good day. Zevi had a check-up at OHSU when no blood was drawn. The first poke-free visit there. I don't think the poor guy believed that he's gonna get away until we got to riding the cable car. The visit went well - the docs did a physical exam and found Zevi to be doing fine over all. The spleen may have gotten a touch larger, but not in any way that is concerning. The important thing is that Zevi seems to tolerate 6MP and the drug just might be helping. He is eating more, clearly has more energy. So far so good. (t'fu-t'fu)
Also, our transplant coordinator shared more encouraging news. The second of her most most promising donors made contact and scheduled a blood collection in a week. We should have their results in two. Meanwhile the blood work results of donor 1 are due mid next week. Here is hoping. Also, three promising cord blood units have been reserved for Zevi and are being tested.
Where does this leave us with all the testing many folks have kindly offered to get tested? At the recommendation (urging, really), of our transplant coordinator we are going to suspend rapid testing of people for now. Those willing to sign up for the registry please, please do it. It is a kind thing to do. Since we do not know yet how all the testing is going to turn out - please do consider yourselves in Zevi's "strategic reserve", for now placed on stand-by. I will keep everyone posted.
Also, our transplant coordinator shared more encouraging news. The second of her most most promising donors made contact and scheduled a blood collection in a week. We should have their results in two. Meanwhile the blood work results of donor 1 are due mid next week. Here is hoping. Also, three promising cord blood units have been reserved for Zevi and are being tested.
Where does this leave us with all the testing many folks have kindly offered to get tested? At the recommendation (urging, really), of our transplant coordinator we are going to suspend rapid testing of people for now. Those willing to sign up for the registry please, please do it. It is a kind thing to do. Since we do not know yet how all the testing is going to turn out - please do consider yourselves in Zevi's "strategic reserve", for now placed on stand-by. I will keep everyone posted.
Wednesday, June 4, 2014
December pics
Trying to restore some chronological order... Here is December 2013, Benjamin at the New Year morning kids activity, a.k.a. "Utrennik"
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| Benya looks rather skeptical at first... |
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| ... but rocking out with Rafi is fun! |
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| Naturally, we gotta hit on some girls |
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| And here is the New Year tree! |
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| Benya got a cool gift - a mechanical bug |
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| with grandpa Misha |
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| Enjoying some ice cream after |
Monday, June 2, 2014
Boat trip on May 24th.
The Sunday before we took a ride on a boat (thank you Kristi for an awesome idea!). Here is the evidence
Later on we stopped by Bridal Veil falls
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| Brothers on the boat |
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| I think he likes his dad... |
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| If you don't hug yourself, who will? |
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| Safe to say those two like each other |
Later on we stopped by Bridal Veil falls
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| Not gonna give you! |
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| Benya scores a hug |
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| Zeva, dad, and the waterfall |
A bit of hopeful news. 6MP.
Of the five people OHSU has identified as potential good matches one has made contact. What this means is that the person agreed to come in for a blood test that provides more detailed genetic information (and, hopefully, confirms them as a donor) and checks their present state of health. At this point we wait some more.
In the mean time we are continuing to test related donors. A related donor - a cousin, for example - might be a slightly more favorable match than a completely non-related donor. A large national campaign is still an option, should we need it, yet we are reluctant to start immediately.
People related to Zevi by blood, should they choose to get tested, are requested to contact me for an expedited process. We have an account set up at a testing facility right here in Portland.
Those who wish to be added to the registry - maybe to help Zevi, maybe to help someone else - please, please go to bethematch.org and sign up. The test is free and easy (though processing time is not terribly fast). Alternatively you may choose to work with giftoflife.org, a Jewish registry. Ultimately, all data is pulled when a search is performed. Whatever organization you work with, you do a great thing.
In the mean time Zevi was started on very low dose of a drug called 6MP. It is a chemo drug, but Zevi gets it in very mild amounts. Hopefully Zevi will tolerate it and, in turn, the drug will make him feel better. So far it as has gone "OK" - the drug is not much good if it is thrown up. One day at a time.
In other news: I am resolving some of my personal IT problems and cute pictures should resume shortly.
In the mean time we are continuing to test related donors. A related donor - a cousin, for example - might be a slightly more favorable match than a completely non-related donor. A large national campaign is still an option, should we need it, yet we are reluctant to start immediately.
People related to Zevi by blood, should they choose to get tested, are requested to contact me for an expedited process. We have an account set up at a testing facility right here in Portland.
Those who wish to be added to the registry - maybe to help Zevi, maybe to help someone else - please, please go to bethematch.org and sign up. The test is free and easy (though processing time is not terribly fast). Alternatively you may choose to work with giftoflife.org, a Jewish registry. Ultimately, all data is pulled when a search is performed. Whatever organization you work with, you do a great thing.
In the mean time Zevi was started on very low dose of a drug called 6MP. It is a chemo drug, but Zevi gets it in very mild amounts. Hopefully Zevi will tolerate it and, in turn, the drug will make him feel better. So far it as has gone "OK" - the drug is not much good if it is thrown up. One day at a time.
In other news: I am resolving some of my personal IT problems and cute pictures should resume shortly.
.jpg) |
| Zevi at the second visit to OHSU, late April 2014 |
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